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Patient Stories

Tara Z’s Story in Honor of Rare Disease Day

I was diagnosed with stiff person syndrome (SPS) on a Monday night in October of 2017. The impact of my condition on my life has been tremendous. My symptoms… Read More

Hudson’s Story in Honor of Rare Disease Day

I faced lot of challenges both socially and academically throughout my life. However, with a lot of love from my mother and godly mentors, I was able to overcome many of those struggles…. Read More

Rare Disease Patient Advocate Tristan Lee Shares His Story with WebMD for Rare Disease Day

Tristan Lee, a 37-year-old Pennsylvania man who has lived with sickle cell disease since birth, is a patient advocate with Sickle Cell Disease Association of America, a NORD member organization. Today, Tristan shares his… Read More

Amy’s Story in Honor of Rare Disease Day

I am a patient who has lived with systemic scleroderma for over nineteen years, having been diagnosed as a teenager. 

Rare Disease Day is a day… Read More

Ashlee’s Story in Honor of Rare Disease Day

was diagnosed with primary immunodeficiency (PI) when I was four years old. The adversities I have faced with rare disease started even before I received a life-saving diagnosis… Read More